New Neurologist Visit

I adore my neurologist, truly.  I have been involved with her since the  beginning.  She was a fellow observing my initial doctor.  When she established her practice, I jumped at the chance.  She explained Zumba and WII to the original doctor.  I have been with her since 2008.  Her philosophy meshed with mine – sometimes a fall is just a fall.  I have always fallen every time I am upset since I was young.  I spent most of my senior year in college on the ground.  The upside is I know how to fall.  I have been told, as much as something like this is possible, that I do it gracefully.  She said if I wanted to wear kitten heels it was fine as long as it was safe.  Personally, she didn’t understand why anyone would want to wear heels.  We email each other.  She practices in a multiple sclerosis institute.  This has given me access to cutting edge research and care.  We agree to disagree on what is inevitable.  In recent years, she has been saying I need to recognize this.  Inevitable is a word I disagree with.  Maybe I am in denial, however, inevitable implies defeat.  Defeat cannot be an option for me.

The Institute is located in NYC and I usually go by train.   I have weakened so that isn’t really possible.  I would have to take car service for hundreds of dollars.  Well, I really haven’t worked in three years so that is an issue.  I did try and get transportation through health insurance.  I jumped through hoops.  I have had my primary care doctor send one form three separate times.  My neurologist is considered  out of area.  However, continuity of care is not considered a valid reason.  Really?!  I have a chronic illness and was being seen by a renown  doctor for 10 years in an Institute dedicated to my condition.  I participate in research there.  This was not good enough.

I found there was an Institute, driveable from where I live.  Problem – this is where I had my second opinion years ago.  It was horrible.  The doctor literally forgot I was there.  When she saw me, she asked what I expected of her.  An f*ng miracle?  At the end when I asked what I could do and was told to live a good life.  I voted with my feet.  It would have been closer and easier. She was an alum of my uni.  Even though I prayed when I was 18 to never get sick so I would never have to deal with any of them, I tend to pick alumni.  She exemplified all the reasons why not.

So, I was faced with returning.  When I rang, I was specific that I did not want HER! Surprised! They made it with someone else.

It started off well.  I was taken more or less on time. There was even an apology for the 10 minute delay.  None had been offered at the time of the hours long wait when that occurred. It went downhill from there.  One of the things my husband and I have been concerned about has beenmy increasing pain.  The medical herb is just numbing it.  I even had to fill out a questionnaire about my levels of pain.  Nothing!  And we asked more than once during the course of the visit.  The closest we came was a suggestion to try different combinations of the medical marijuana.

I brought all three spectral legs, including Frankie.  I indicated the problems with Frankie.  Again, nothing! Onto the chariot aka the rollator.  I self-prescribed and bought mine on Amazon for $25.  I need something different.  “Your physical therapist can do that for you.”  Really? And PT?  She wrote me a scrip for her office, over half an hour away.  Tone deaf!  Diet?  Exercise?  No comment. Call me dissatisfied and back  to the drawing board.

Oh and let us not forget the Ocrevus.  I am scheduled for October 4 in NYC.    Yes, I can get it with her but my husband probably can’t be with me and I’ll be in a circle with 5 other people.  We want a hospital and a semi-private setting.

The only thing I did get is an increase in my Baclofen.  More on that in another blog.

She didn’t even ask me for a return date.  Guess the feeling was mutual.

I feel defeated as I don’t think I’ll be able to go back to my doctor.  So, another stressor, how do I find the care I need?

3 thoughts on “New Neurologist Visit

  1. I cannot say I know what you are going through. I do not, but I can pray. I can empathize. I do know about certain doctors and issues concerning. Thankfully, I have a good team now for all my issues. Best wishes, thoughts, prayers, hugs.

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  2. Thanks. Very much appreciated. The problem is for all of us to put together a team that understands. And yes, the issue is team. We have to know that we need one and then go about putting the one we need together,

    Like

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